A Good Life; A Good Death

How hospice care helps families at their time of greatest need

Henry Elliott was the perfect candidate for hospice care, but, like many Americans, he was unaware of its benefits. Diagnosed with prostate cancer in 1992, he underwent a series of treatments to help manage his disease. He did well for more than 15 years, but stopped, according to his wife, Marjorie, when the treatments became less effective and more taxing. His situation took a turn for the worse when he began suffering from intense pain and couldn't reach his doctor. Although the Elliotts were familiar with hospice, it took a family member’s intervention to get them to choose it. Once they did, Henry’s quality of life improved dramatically.

"Many people are confused about what hospice means," said Jane Lincoln, a health educator at AARP. "Hospice is a concept of care, not a place." Viewed as a team approach to caregiving, hospice involves nurses, social workers, home health aides, and even chaplains, all on call to administer care to patients and their families. Individuals are typically referred to hospice when they have a life-limiting illness or injury and are expected to live no longer than six months.

For those whose symptoms become too difficult to manage at home, there are inpatient facilities that can provide short-term care. According to Lincoln, who worked for more than 12 years as an oncology social worker at George Washington University's Cancer Center in Washington, D.C., "Three of the biggest symptoms a patient undergoes when their illness progresses are pain, fatigue, and nausea." Hospice staff is trained to deal with each of these symptoms and can tailor a system of care based on the individual’s needs.

"We do a lot," said Vallerie Martin, RN, case manager for Community Hospices in Washington, D.C. Martin has been working with families for more than 14 years. Part of her job is to help manage their expectations from the minute their loved one decides to receive care. She says she spends a lot of time preparing families for symptoms that may arise and how to manage them.

While hospice facilities are on the rise—roughly 4,700 hospice programs currently operate in the United States, up from 4,500 in 2006—hospice is still underutilized. In 2007 the median length of service a patient received was roughly 20 days. "Many people turn to hospice with only weeks to live," said Martin. She believes this may have to do with the common misconception that if patients elect to undergo hospice care, this means they are giving up hope.

"Hospice is not a death sentence," she said. While hospice focuses on caring rather than curing, a patient can end hospice to seek curative treatments at any time. In some instances, hospice has rehabilitated patients, allowing them to restart treatments they had ceased because of illness. And some hospice services are beginning to allow patients to participate in life-extending treatments while undergoing hospice care.

One of the greatest benefits of hospice is the relief in knowing the medical support is there, leaving room for the family to care for the patient's personal needs. The doctors can diagnose the medical issues, like slow or irregular breathing, while the family focuses on the range of emotions a patient may be feeling.

Julia Templeton, who at 82 had Alzheimer's disease and chronic obstructive pulmonary disease, spent the final two weeks of her life in an inpatient center at Montgomery Hospice in Rockville, Maryland. There were times she would wake up in a panic, worried about the farm where she had been raised as a child. The only thing that could calm her down was a phone call from her sister, still living there, reassuring her that everything was all right.

Martin stressed the important role family often plays in the hospice equation. She said, "They are not only going to give love and emotional support, but eventually they are going to be doing the caregiving, which will increase as the patient’s condition declines." The team approach underlying hospice care can't be underestimated, however, because it enables medical professionals and specially trained volunteers to do things like fill prescriptions, make consultations, or just sit with the patient and hold their hand. These shared contributions give caregivers the relief they need to give patients the kind of care they deserve.

When recalling the level of assistance she received from Community Hospices, Marjorie Elliott said she could never have kept Henry at home without it. "If I needed something," she said, "I could call them 24 hours a day."

According to Martin, this level of support is hospice's greatest gift. "People don’t want to die in pain," she said, "and they want to be around the people they love most in the world. And that’s what hospice services can provide."